*Survey extended to 5pm Monday 28 August 2017*
The Council for Evidence-based Psychiatry, in collaboration with the University of Roehampton and with the support of Baylissa Frederick of Recovery Road, has launched a survey to gather data on the experiences and provision needs of those who are suffering, or have suffered, from prescribed drug dependence (PDD) and withdrawal.
The survey is open to all adult volunteers; however we are particularly interested in volunteers from the UK as these responses will help inform our work around the provision of UK services.
You will be asked to complete a questionnaire, which is designed to obtain information on various features of PDD withdrawal, withdrawal provision, as well as preferences for future provision.
All the data gathered will be used to generate research to inform policy. Data will be ultimately published in both academic and public policy report form. Completion of the questionnaire should take no more than 20 minutes, but could take longer should you desire to answer written questions in depth.
The survey opens at 9am on 10 August 2017 will now close at 5pm on Monday 28 August 2017 BST.
The link to the survey can be found here:
Thank you in advance for participating in this survey.
My son has psychiatric drug dependency but has no sence of self-autonomy to make a informed consent. . I have power of attorny & would like to fill the form in on his behalf.
I have no doubt there are many service users who are in the same position; to omit those people who have been so badly damaged is likely to leave a gaping hole in the outocme of your survey.
I would welcome a response.
My name is Phil Braithwaite and I am an involuntary benzo prescription addict in withdrawal. I have been housebound now for over 2 years since I was reinstated on 10 mg Diazapam atetr a too fast withdrawal at an In Patient Unit in Birmingham . I am looked after by my wife Margaret who is emailing this to you -it is in her maiden name . My symptoms at presnt are very painful and more painful now than at the beginning of the tapering . I am now down to 1.3 ml diazapam a day . I have had no help in Birmingham which is why my wife has set up a petition for a prescription tranquilliser support group so that at least I wouls be able to talk to fellow sufferers in my home city . At present I an suffering from heat surges and when my head gets extremely hot I have to spend an hour or so cooling it with cold wet face cloths . Another neuropathic problem is sweating and feelings of hot and cold . I cannot tolerate a temperature of less than 25 degrees . My legs have pains and my knees heat up when I am standing . I don`t know how long this is going to go on and now ispend most of my days in bed ;I perceive all clothing and bedlinen to be damp and spend a lot of time hair drying it . This enforced period in bed is relatively new since not long ago I could come downstairs and read and listen to the radio but definitely not at present . Also because of my temperature to cold I have only been in my garden 5 times this year and then only for short periods . I don`t want to give My wife describes my body as being my torture chamber and it is . Do get back to me -the petition that might heplp me si:
hope you can sign it and get others to.
Phil, There are many suffering like you at survivingantidepressants.org They saved my life when I felt I couldn’t cope any more.
To follow my last post, it is online peer support, different to any other online group.
I am from US. May I sign?
I am very sorry to hear your story. I am also a withdrawal victim and empathise with your pain and suffering. But very lovely to hear your wife is supporting you. I applaud het for that as well. In the end you both suffer and fight this battle together. I tried to sign your petition but as I am living in The Netherlands it is not possible for me. But in my heart I support you and send you all my love and energy so you will overcome this hell
As a psychiatric survivor of being drugged for over 35 years, and enduring cold-turkey withdrawals from Klonopin, Effexor, Trazodone & Lithium while my mental healtcare workers refused to provide any support or help I can’t thank you enough for this survey and desire to improve this madness of making us patients suffer endlessly, and needlessly for decades as we take our medicine. I’ve had my entire life destroyed. We even gave up our children. We’ve lost everything. I love you Dr. James Davies, and the cepuk.org website. Thank to all who are giving voice to us who have been silenced by our mental health-care facilities. God Bless you all.
survey is pretty thoroughly flawed, typical of surveys.
for starters, I can’t go back to the previous page after I’ve realized you’re looking for simple answers to tough questions. good luck getting anything out of this you didn’t already know, basically that drug mfrs tend to downplay the difficulty of quitting addictive drugs.
I am a 51 year old male living in the UK,
I had been on anti depressants for 16 years and decided to stop I did a withdrawal over 4 months longer than my GP advised but I know now way to fast, two months after stopping I got delayed onset withdrawal very badly, after searching the internet I found the forum surviving anti depressants and started reinstatement.
If I can assisted you any further with information please feel free to e-mail me, I would be glad to help,
I’m not one who likes publicity but because GP’s prescribed me an antidepressant continually for 12 years and I discovered other safer alternative treatment that would have not needed Prozac, I need to speak out to help, if not prevent others the same unnecessary treatment.
I can not describe the effects of withdrawal without providing my background.
My GP first prescribed Prozac, 20mg daily, to help cope with the sudden loss of my father in December 1999. Main symptoms were bouts of crying and feeling low. In April 2001 my mother lost her battle with Leukaemia (AML) after 2 1/2 years so the GP advised to continue taking Prozac.
In September 2005 my late wife was killed and my GP said “You are too emotionally labile to ever consider withdrawing the antidepressant.
In August 2011, after 12 years of continual use, I asked my GP for a Vitamin D test, which he declined twice and I had to pay privately to discover my level was just 34 nmols/L (Recommended range 75-125 nmols/L). I took the result to my GP who asked me to leave it with him in order to phone the hospital’s biochemist for an interpretation and treatment protocol. The following day, a prescription was made for Vitamin D 400 IU’s twice daily. My research and a private consultation recommended Vitamin D3 5000 IU’s with CalMag 500mgs daily. I retested 3 months later and my level returned at 98.6 nmols/L. I continued taking 5000 IU’s daily, retested again after 3 months and my level had only risen to 111.9 nmols/L proving my maintenance dose of 4000 – 5000 IU’s was required.
A VERY SIGNIFICANT incident happened when I began to replete vitamin D. I began to experience chest pain, dizziness and palpitations. Instinct told me that Vitamin D (The good guy) was arguing with the Prozac (The toxic bad guy) and it was time to self medicate a Prozac withdrawal program against my GP’s wishes. I reduced Prozac 20 mg a week by missing one day’s dose per week. e.g. I reduced 7 days = 140 mgs to 120mgs over 7 days. Prozac withdrawal is easier than other antidepressants like Citalopram because of its 72 hours half life. However, the side effects of withdrawal were similar to when I began to replete vitamin D, but further research showed dizziness, lightheadedness, palpitations and a sensation of brain zaps (Needles being pricked into the skull) was a sign of the liver detoxifying the body.
With circa 80% of the UK being Vitamin D deficient, it is my opinion that, too many antidepressants are being prescribed before vitamin deficiency is diagnosed. If not, why the disparity of treatment when a private GP looks at nutrition as a first issue? The NHS budget deficit could be slashed overnight if NHS GP’s reintroduced holistic medicine and began treating the underlying cause of a disease with nutrition before prescribing symptom relief (Painkillers) or mind altering drugs for behavioural problems.
I was prescribed xanax at 17 years old daily for many years and then Valium and then klonopin I am 37 now and the doctor said because of some new law that he had to stop writing benzodiazepines- it has been complete hell and causes me to become housebound. Fortunately I found an old bottle that I thought I had missed placed when I moved down in an old box as I was going through it I am mediately felt better when I started to take them in the meantime I have been desperately searching for a doctor or psychiatry Doctor to put me back on my medicine with no luck whatsoever after 17 years this is not a drug that should be ripped out from under you I did not abuse it are used daily as prescribed and now I don’t know what to do I’m in New Orleans and I can’t seem to find anyone to help
I have been dependant on lyrica for 2 years and it has caused me a variety of problems that along with sertaline ..my hair is falling out I’m having vision problems .stomach pain which leaves me out of breath and unable to move far .my balance is altered and my gait which makes me trip over .my muscles have stopped working ,I’ve put 2 stone on in weight ..I have very poor concentration and my memory is affected .my hands swell and get very painful like I’ve dipped them in hot fat . I have terrible bouts of shaking and feeling uneasy ..I have no emotions happy or sad my daughter died recently and I had no feeling at all ..many more things but my hand hurts to much to type
These drug’s could easily be stopped If a natural alternative like cbd could be prescribed
I am so frustrated that I missed the window of opportunity to complete the survey for withdrawl from psychiatric drugs. I can identify with Sandra, who also submitted an email regarding this survey. I have suffered immensely at the hands of the Mental Health community as I try and try and t r y and t r y to get off Saphris, the drug from HELL!
Let me back up, I had been taking Gabapentin in the evenings before bed to help me sleep better. The problem with that drug was that as my dosage increased the side effects did as well. I felt like everywhere I sat in my flat, that there were things moving around, (mice I thought at the time) inside my sofa cushions, my bed, chairs, etc… That was bad enough but the tiredness, almost hungover type feeling I had the next day until roughly Noon, was by far a much worse side effect. About three years ago, my psychiatrist changed my sleep drug on me. My dad had gone to pick up a written prescription for me at his office and the secretary said I was to try these samples of new drug called Saphris and quit the Gabapentin altogether. They gave me a month worth of samples and at the time I didn’t think much about it. I had been working during that time so I was preoccupied and going in a million directions. Plus, to be clear, I trust my doctor. As the months went by my Saphris dosage slowly increased. In January 2016 I changed jobs and took a very high stress job as an assistive technology trainer. I developed an entire computer curriculum from scratch that I then used to teach people with a variety of disabilities how to use the computer productively and safely. Needless to say, I hardly had time to contemplate things in my personal life as I worked most evenings and weekends in addition to my 40+ hours during the day. By the time I started this job I was completely disgusted with my weight I had pretty much out of the blue packed on. An important side note, during my adolescence through age 32 I struggled with anorexia and bulimia. I had been hospitalized multiple times for it for months at a time. I am sharing this because it is relevant and important to understand that I keep a “hawk” eye watch on my food intake because of my hypersensitive fear of gaining weight. I’ve not weighed myself since my teenage years because the numbers on the scale are such a mind-fuck for me and can ruin my day if I think they are too high. Ok, so like I said, I started noticing that I had been steadily gaining weight as things were at first getting tight, then pretty soon, I couldn’t zip my pants, then, wholly shit, I couldn’t get them up over my hips! I was fed up. But for a good solid 2 1/2 years I let my weight go as I developed this curricula for my job and began teaching it. Until one day, I wasn’t because I was terminated. This was a very good thing as I hated this job! This was last August 26, 2016. I spent all of last fall in a deep depression that got so bad I did 12 ECT treatments. Unfortunately they did not help me. My doctor and i kept trying different antidepressants and different combinations of them for me to find relief. Then I came across a TED talk on Ketamine treatments for depression. After looking into Ketamine infusions I proposed this new treatment to my father. Here in the US these infusions are not covered by any health insurance. He knew I had been struggling so he agreed to let me try them. I had a total of 14 infusions. They worked! The problem is that the Ketamine doesn’t stay in your system for very long so you have to continue doing the infusions. Mine were Northwest of Chicago, IL, which is just over an hour and a half drive for me and they cost $675 per infusion. After my last one my dad told me that it was my birthday present and that I wouldn’t be able to have any more of them. I can already tell that I am slipping back into the darkness of my deep, painful depression. Ok, so here is how this all ties into my quitting Saphris: After my 2nd infusion I felt much better and decided to educate myself on the side effects of Saphris. As soon as I found out that weight gain is one of the biggest side effects I knew I had to get off it. I called my psychiatrist to tell him I wanted off. He said, no problem, Nancy, just stop taking it. I said are you sure? He said, absolutely, no problem, it’s extremely easy to get off, just quit taking it and you should be good to go. To say that was incorrect advice would be an understatement. Let me tell you that I have been on every antidepressant out there, including Parnate, MAO Inhibitors, Prozac, Wellbrutin, Zoloft, Celexa, Cymbalta, Viibryd, Effexor, Lithium, Keppra, plus I take Adderall for ADHD. I made it 8 days without any Saphris but it was no walk in the park. I was so sick, I felt sick to my stomach almost the entire time. My hot flashes were so bad, I would sweat profously from every pore in my body. I sweat during the day, at night, didn’t matter. The worst side effect of quitting Saphris cold turkey was the effect it had on my mood and mental state. I was so full of rage I couldn’t see straight. I lashed out at any and everyone. I had NO control over my emotions I had no control over what I said to others. On the 9th day I had arranged to meet my doctor at his office to get some more samples of Saphris because I couldn’t take it anymore. He was late getting to his office so I had to sit in the hallway outside his locked door. As I sat there I got madder and madder and madder at him. I was covered head to toe in perspiration, so I was sopping wet. Finally I had had enough and decided to call the mental health hospital where he sees his inpatients at in hopes of catching him to find out what the hell was holding him up. I got the receptionist on the phone and told her this was an emergency and that I needed her to get a hold of Dr Schroettner ASAP as I was at his office waiting for him and he was MIA. She put me on hold as I have no doubt I convinced her that I was clearly struggling and needed help. SHe came back on the line and told me that my doctor had been there but he was enroute to his office and should be arriving shortly. He did just that. By the time he got there there was another patient waiting for him in the hall way with me. He came through his office and opened the front door and I unleashed on him, shouting every profanity I could think of, what the hell is wrong with you? How dare you tell me to be here at xyz time and then you don’t even show… He just looked at me like I was nuts and told me he didn’t deserve that and that I should leave. I called the next day to set up an appointment and his secretary told me that he would see me one more time but that after that I would need to find another doctor. He wasn’t going to put up with a patient talking to him the way I did. Now I was even more pissed. The whole reason I was out of control was because He had told me i could quit Saphris cold turkey without any problems. Bullshit. I could not function. I had a Ketamine infusion during that 8 days without Saphris and I was wide awake during the entire time. Normally it is very relaxing and calming, my bloodpressure was off the charts and I was WIDE AWAKE. They said that NEVER happens. Once I got the Saphris samples from my doctor I took one in the parking lot of his office before I drove home. Within the hour I started to feel better. I have scowered the internet forums for help and guidance in quitting Saphris and what to expect and how slowly to taper down so I could get off this damn drug once and for all. I know I joined several forums and I’m assuming one of them is where you got my contact info. For the majority of the time I had been on Saphris I was taking 20 mg. every night before bedtime. On the 9th day that I quit cold turkey I started back on it at 10 mg. I stayed at 10mg for 6 weeks then dropped down to 5mg for 8 weeks. From there I attempted to go to the 2.5 sublingual wafer but that turned out to be too big of a drop for me. I started to feel as shitty as I had when I had quit it cold turkey. My doctor suggested that I take one and a half 2.5 mg wafers for a rough total of 3.7mg . This decline was much more tolerable. I have been on 3.7mg for over 2 months and even though I can’t wait to be done with this hellish drug once and for all, I am scared to death to drop down to 2.5mg. The withdrawls are the absolute worst that I have ever experienced. I have detoxed from opiates. I was an opiate addict so I abused them for years before I quit cold turkey. That was a walk in the park compared to Saphris. No lie! Once I make the leap to 2.5 mg I plan to stay at that dose for a month and then I will cut the 2.5 in half and take that dosage for one last month before I finally say goodbye to Saphris. What’s very scary to me is that in all my online searching, I couldn’t find a single person who successfully tapered off Saphris!!! What does that tell you? Wicked drug. And my doctor was handing them out like they were candy. Giving them willy nilly to any and every patient he had. Supposedly this drug is prescribed for people with Schizophrenia. I have never been schizophrenic and have no symptoms for it. I think he just saw/heard?/read? somewhere that Saphris really worked in getting someone to sleep and quick! I have since reported to him, as he has multiple, multiple patients who suffer from eating disorders, that he should NEVER EVER prescribe this to any one of those patients because of the problem with the weight gain. I have also been honest with him in that for the past 2 months I have started binging and purging again as a way to lose weight. He obviously cautioned me that this was unsafe, obviously, but said he understands. If someone can make sure my rant goes in a place where potential patients are looking for more information before they try taking Saphris, that would make my suffering not in vain. Finally, my shorts are starting to fit again, one by one. I am still disgusted with my weight but know that I am actually losing weight so I’m trying to be patient and gentle with myself. My advice to psychiatrists everywhere, do your God Damn HomeWork before you throw one of your patients on a drug!!!! Shame on you for being so caviler about a patients health and wellbieng both in putting them on a drug and getting them off the drug!! What happened to me is completely unacceptable!! It should NEVER have happended. I should NEVER have been put on this drug. Thanks a lot doc. That trust I spoke of, is gone. Forever.
I am just now catching up on emails as we’ve been traveling for an extended period of time. If you decide to further extend the dates to participate in the survey please let me know. My husband has been tapering off of many mental health medications very slowly (over 3 years). It was after reading works by Dr. Peter Breggin that I first came across the idea that the very medications that were supposed to be helping him manage his depression might actually be making it worse. It was a long fight and much harmful treatment before we found a provider that at least was willing to support us in withdrawing from the many medications my husband was on even if he didn’t agree that that was really the problem. My husband is finally free of all mental health medictions but still struggles with some withdrawal side effects. Thank you for researching and continuing to share the information of the dangerous effects of mental health mefications.